AML\Remission\Relapse\Being Positive

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 Hi, hope the holiday period is as good as it can for you!

I wanted to just update my situation and see if anyone is on the same journey.

After a 3-month bone marrow biopsy early Dec, it was seen that there where abnormal cells, so after another biopsy where they took a piece of bone!  I got that dreaded phone call from my consultant saying I had relapsed. The good thing is that there is further treatment, a couple of days later I was in hospital, starting the first of two cycles of FLAG Ida than hopefully to have a Stem cell transplant (as long as a donor can be found) although I had not had this treatment before I have had 4 cycles of intensive Chemo! And know what to expect.  I was told this was stronger the pervious treatments.

Currently in hospital and finished Chemo and now Neutropenic, similar side effects from pervious treatment and we all know there not great! Now awaiting for bloods to recover (3-4 weeks), but as I have caught COVID (in hospital) I have been isolated with no visitors over the Christmas period! Not great but the team on the ward ha made it as good as possible.

If anyone is going through or been through the same and can give any insight to the process would be good especially the Stem cell transplant process as it will be the specialist team who will update me on this but that could be next month!

Stay Positive Thumbsup

Gman (Garry)

 

 

 

  • Hi Garry & Joey,

    Hope you are both doing well...

    Garry glad you had a good time at Centerparcs... its so good to get away for a few days with the family....hope your back is recovering from the bowling.....

    Hopefully the glandular fever is under control and going in the right direction... The weather has been so great lately really lifts the mood, 5 consecutive days of sunshine - must be some sort of record! 

    I will sort out the shingles vaccine and Covid, flu with the GP..

    Impressed to hear you are doubling your step count.. even if it does hurt a bit the next day....

    Joey, hope all is going well with you and you are enjoying the September weather. Hope clinics are all normal when you have them..

    Cheers

    John

  • Hi All

    Hope your clinics went well and your doing well.

    Mine not so good, I have Thrush in the mouth again but worse this time, not nice! So on more medication and have been feeling a bit tired last couple of days and woke up this morning with a rash all over chest and back along with feeling hot and cold! Got hold of the specialist nurses and been prescribed a cream and have to go Monday for a review, not sure if this is from the cell top up or something else. Hopefully find out more then. Also taste buds have gone backwards, everything tastes horrible.
    I guess we are going to get set backs but just have to stay positive. Blush
    I have vaccinations booked next week but not sure if I will be able to have them now.

    My step count has basically stopped, but as soon as I can will be pounding the streets Joy 

    Hope you have a good weekend and next clinics go well.

    Stay strong & positive

    Garry

  • Hello fellow travellers

    So sorry things aren't going so well this week Garry, but how lovely you were able to enjoy Center Parcs. Little wins.

    Could the rash be GvHD? I had it across my back and shoulders shortly after transplant. Steroid cream sorted it out fairly swiftly. Hopefully you'll get some relief soon. Have you had to drive all the way over here for cream? 

    Thrush sounds unpleasant and probably isn't helping your taste buds. It's difficult experiencing setbacks isn't it? I'd almost stopped ciclosporin and had a text today to put it back up. I associate this time of year with relapse so anything out of the ordinary sends my brain into a spiral. Even though the BMT nurse says it's nothing to worry about.... I hope this is a minor setback for you and you're soon back on the path to recovery. 

    How are things with you John? Hopefully you'll be getting your immunisations soon. The consultant warned me to be extra careful as all the winter viruses circulate...I have a cold (thanks kids) so I'm hoping it stays mild. My dad has just recovered from Covid so that's doing the rounds. 

    I was able to enjoy my daughter's 16th last weekend, which was just lovely. The celebrations continue - she experienced her first mosh-pit this week at a BBC Introducing gig - she loved it! Proud mum moment (always been partial to a mosh-pit myself)! Tomorrow she's going to a Queen tribute show - so funny - one minute it's Taylor Swift, the next it's Fat Bottomed Girls blasting out!

    I shall be catching up on Only Murders in the Building, Kaos, or that night train drama. And baking of course. Coffee and walnut cake today. 

    I wondered if either of you fancied being in a little WhatsApp group? Thought it might be nice to share real time updates, useful links, pics of my dog... Ha ha! Absolutely not offended if you don't fancy it. If you do, I'll unlock my email settings here so you can send your phone numbers. Anyway, mull it over. 

    In the meantime, wishing you both well and hoping you're able to enjoy the autumnal changes outdoors.. Really hoping this is a blip Garry and that you feel some improvement soon.

    J

  • Hi,

    So rash got worse with ulcers in the mouth, did a temp this morning which 38.2. Currently in hospitial having treatment, think lol be here for a few days. Yes it’s GvHD and quite bad along with an infection. Not how I expected to spend the weekend. Hopefully with the medication I will feel better soon.

    Yes happy to join a WhatsApp group.

    i will answer message when feeling better.

    Have a good week and clinic.

    Staying Positive

    Garry

  • Hello Garry & Joey

    Garry sorry to hear about your news.., I am confident that you with your positive attitude that you will be out of hospital soon.  Sending best wishes and positive vibes! As you say there will be challenges along the way to keep us all guessing about what’s happening next..please keep us updated…

    Joey great that you were able to enjoy your daughter’s 16th birthday that’s fab you’ll be in the mosh pit with her soon enough! 

    Yes definitely WhatsApp is a great idea! Grinning
    Watched the train drama almost as unpredictable as a regular train journey these days! Still enjoying Slow Horses on Apple TV and on channel 4 married at first sight. It’s completely trashy of course but worryingly compelling viewing… I put it down to a side effect of the treatment! 
    Keep on truckin!

    Cheers

    John

  • Hi Garry & Joey

    Garry sorry to hear your news…I am confident that with your positive attitude you will be out of hospital and back home very soon..please keeP us updated..

    Joey glad you were able to enjoy your daughter’s 16th birthday. You will soon be joining her in the mosh pit!  
    Still enjoying Slow horses on Apple TV and watched the train drama on BBC  almost as unpredictable as going on a regular train journey these days…

    Yes definitely great idea for a what’s app!  

    Catch up soon 

    cheers

    John

  • Hello

    Oh Garry, so sorry you're back in hospital. I was really hoping it wouldn't come to that. Are you on our favourite ward? Hope you're feeling better and being well looked after. Ideally I hope you're home, but if not I hope you're improving.

    If it's any consolation (which it won't be) it's raining cats and dogs so it's been a Netflix weekend. 

    I've sent you both a friendship request on here - if I've got it right, once you accept that you can send me a private message with your phone numbers and I can make a WhatsApp group.

    Hope all ok with you too John. Still ploughing through Night Sleeper, Sherwood (bit close to home! Odd seeing those events dramatised), and the new Monsters series on Netflix. Thank goodness for Only Murders in the Building! A lot more light-hearted!

    You're in my thoughts Garry - speedy recovery to you.

    J

  • Hello Garry & Joey

    First of all sending positive thoughts and best wishes to you Garry for a quick recovery and to get back home ASAP.. hope you are being looked after well..

    Joey I saw your message and sent a reply with my details..

    Just been to clinic today for blood test. The last chimerism results got corrupted somehow by the lab so had to be redone..

    Talking of TV I have been watching among other things Married at first sight with my wife…we didn’t get married at first sight by the way….

    It’s a bit trashy and scripted but somehow compelling viewing and gives my brain a rest after channel 4 news and news night…! 
    catch up soon

    cheers

    John

  • Hey guys

    Just wondering how you are Garry.

    Thinking of you. 

    J

  • Hi,

    Sorry for not replaying, been a bit of a rough week! GvHD most of body quite bad!. Mouth ulcers  and  thrush along with no taste and infection! Then had to have immune chemo for that virus that has been hanging around.
    J yes on our ward Thumbsup waiting to find ne t steps.

    Hope both your clinics went well and will catch up soon.

    Staying positive Blush

    Garry